I had my third shot of Stelara on Friday, about 4 days ago, and it's working. No pain!! No swelling!! The fatigue is gone.... I can use my brain, some. I still awake sore and stiff but after a long walk I feel much better. I haven't used my pain meds in 4 days! Had a Rhemy appointment yesterday and he is pleased with the results, labs normal. Did develop a staph infection on my face after the shot. She said that was normal and prescribed antibiotics. It's a start everyone....
Now why do I still feel scared? Like I am waiting for the pain to creep around the corner and shock me? I guess I have had pain all my life.... it was a constant companion. I am so very happy but at the same time nervous and unsure how to live life. I know this will pass and I want to thank all of you for your kind words and support. Here's to a good Tuesday.
Hey, great news. My experience is that every day where the improvement continues/is maintained gives me more confidence that it's here to stay. I hope it is for you.
I too am having a hard time accepting this remission. I am on enbrel and I am doing well. All I can say is keep moving, stay calm, accept and don't think about tomorrow for no one knows what tomorrow brings.
I also have had some relief from Stelara. I have had the 2 loading doses. Next dose is Sept. I am so glad you are seeing good results and getting some relief. You go!
Thanks everyone. I'm still doing well. Some pain here and there but nothing like before. I am assuming the pain I am having now is what "normal" people feel. Pulled muscle, a bump here and there, tiredness. All the things I never felt b/c I was overwhelmed with pain. I hate to say it, but it's kind of nice. Makes me feel "normal".
So, it's been 3 weeks since my last Stelara shot and I have noticed some "quirks" arising. Here are my new symptoms: mild stiffness in the morning, muscle pains (random) in the evening, fatigue (random) mostly in the evening.
I have noticed with all the new energy I am doing way too much. Pushing it to the limit. Do I still need to watch "my spoons". Still have down time? Can doing too much cause flares? Will stress still trigger things? Can you have a flare while on biologics?
This is all still new to me. Not sure how I should handle myself while on these shots.
Great news, in a way! Stiff in the morning, aches and fatigue in the evening … hey, sounds like someone who is exercising muscles that haven’t got much use for a while! Anybody who changes their activity level suddenly might experience that. But I’m no doc, so keep track and keep an eye on how much, and what you are doing.
Most of us who take biologics are much, much better on them, but continue to have symptoms. At the moment, I’m having aching tendons and burning feet. But then again, the weather has been cold and rainy. Without Enbrel, I’d probably be in bed with a pillow over my head. But I can get through my days just fine with an extra Tylenol or two.
You still need to pace yourself and, as you say, watch your spoons!
Thanks Seenie. I'll keep an eye on it. Yes, I've been very busy. I try not to over do it but I have been "trapped" for so long, now I feel free. I'll pace it out.
That is such good news ! I think we all get that fear and worry of the pain returning. I still have good and bad days myself and worry about over doing it to make things worse.
I am on week 6 of my Stelara shot. I'm starting to feel that same old pain again, some fatigue. Running out of energy around 11am.
We did go on vacation last week and dealt with some stress concerning son's gifted abilities, so I am hoping it's a flare of sorts. Hoping. I will have to watch it and see how the next week goes.
Love this discussion and always glad to hear of success with different biologics! As I'm spending too much time these past couple of weeks feeling icky and now WORRYING my Enbrel is going to stop working, it's comforting to know I'm not alone in my fears, and it's good to get the encouragement from wise people with more experience.
You mentioned overdoing it and that is definitely something we have to avoid. But, it's so hard to not overdo it when you're feeling great! Right now I feel like an old lady and just want to feel like I did for a couple months. I need patience!
We all know exactly what you're saying, amielynn, when you say you're scared. Unfortunately, at least for me, that scared anxious feeling is probably hindering my recovery and causing my symptoms to flare. :-(
Aimeelynn and GrandmaJ, you know that stress doesn’t do your PsA symptoms any good (says she who worries plenty herself). This is a disease that waxes and wanes, so even on a biologic lots of us have good times and less good times. And if the worst happens and Enbrel or Stelara poops out on you (it does happen – I believe that the average length of time that a bio works is about two years) there are several others available, and more coming online every year.
Yes, it’s hard to be patient, but it’s harder not to have good treatment at all!
Thanks ladies. I just assumed that Sterlara would fix everything and make me feel my age again. Stupid chronic autoimmune disease!! Sometimes I want to break something with the frustration I have. I do need to scale it back. But I want to run free!! Maybe just light skipping :)
It might. You are early in the process. Stelera works in "fits and starts" as do many of the biologics You are early into this med. Yeah you may some symptoms BUT you will be amazed what can happen where you will be at and what bothers you now that will become a non-issue in future. When the top gets knocked of we can handle a lot. Generally our meber can come and go mostly go because they get straight on treatment and don't have time for us anymore. We have one fella who was in a chair, lost 100#, and did an iron man (not well but he did it) after getting on treatment.
Thanks tnt, I think I will always be around. I need to know there are other people, like me, who feel the same thing. Have the same concerns. Most people in my daily interaction have no idea. I don't even mention the Psa b/c I know they just wont understand.
A few years ago we had to terminate a pregnancy for non compatible with life diagnosis. I was 20 weeks. It was so very hard and I thought the people in my life would be there for me, they were not. Now with Psa, I know who I can talk to and who I shouldn't. Sad but it's true.
